Care and treatment values, preferences, and attitudes of adolescents living with HIV

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WHO/HIV/2013.136

© World Health Organization 2013

HIV and adolescents: guidance for HIV testing and counselling and care for adolescents living with HIV

ANNEX 11 (a): Values and preferences: ALHIV survey

Care and treatment values, preferences, and attitudes of adolescents living with HIV

A survey for the development of WHO guidelines for HIV and adolescents:

guidance for HIV testing and counselling and care for adolescents living with HIV:

recommendations for a public health approach

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2 Table of Contents

Acknowledgements

Abbreviations and acronyms Executive Summary

1. Introduction 2. Objectives 3. Methodology

3.1 Survey design

3.2 Distribution of the survey 3.3 Ethical considerations 3.4 Survey participants 3.5 Limitations of the survey 4. Key findings from survey 5. Discussion

6. Conclusions 7. Appendices

7.1 survey text in English

7.2 Key survey findings in table form Table 1. Final survey population by age

Table 2. Final survey population by gender/sex

Table 3. “If you are currently receiving paediatric or adolescent services, has/have your health- care provider(s) discussed how you will move to adult services?” (Q 16)

Table 4. “How easy is it for you to access your health care?” (Q18)

Table 5. “Do you feel that attending appointments with health-care providers interferes with your life?” (Q20)

Table 6. “If you miss an appointment with a health-care provider, does someone contact you to see why?” (Q21)

Table 7. “How comfortable do you feel asking any of your health-care providers questions about your general health?” (Q22)

Table 8. “How comfortable do you feel asking any of your health-care providers questions about HIV?” (Q23)

Table 9. “Are you responsible for the following:” (Q29) 7.3 Responses to open-ended questions (by age and gender)

7.3.1 “What do you like the most about the HIV care you receive?” (Q34)

7.3.2 “What suggestions do you have to improve HIV care for yourself or other young people?”

(Q35)

7.3.3 “Is there anything else that you would like to tell us?” (Q36) 7.4 Responses to open-ended questions (by theme)

7.4.1 “What do you like the most about the HIV care you receive?” (Q34)

7.4.2 “What suggestions do you have to improve HIV care for yourself or other young people?”

(Q35)

7.4.3 “Is there anything else that you would like to tell us?” (Q36)

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3 Acknowledgements

The World Health Organization (WHO) would like to thank all of the adolescents who contributed their voices to this survey. We would also like to thank all of the partner organizations, non-governmental organizations (of all sizes and in all locations), and especially the youth organizations, who contributed time, money, and effort so we could reach adolescents and young people we may not have been able to access simply through email.

We would also like to thank the many individuals and organizations who contributed to the

development, distribution, and administration of the e-survey: Adam Garner, Georgina Caswell, and Gavin Reid (GNP+); Effi Stergiopoulou (Mortimer Market and Archway Centres, London); Pablo Torres Aguilera (dance4life); Neta Velichko (East Europe and Central Asia Union of PLWH); Scott McGill (Save the Children); Annette Sohn (TREAT Asia); Oyelakin Oladay Taiwo (Positive Action for Treatment Access);

Ntoli Moletsane (‘Mamohato Network and Camps – Sentebale); Grace Muriisa (UNICEF-Rwanda); Sonal Mehta (India HIV/AIDS Alliance); Freddy Perez (PAHO); Asha Mohamud (UNFPA); and the other kind and generous individuals who helped. Many people in the organizations mentioned above as well as the following organizations also contributed as well: UNAIDS, USAID, FHI360, CDC, Elizabeth Glaser Pediatric AIDS Foundation.

We would especially like to thank the following people who donated their time to translate the English- language survey so other adolescents and young people were able to contribute their voices to the consultation: Neta Velichko of the East Europe and Central Asia Union of PLWH (Russian); Carlo André Oliveras Rodríguez, Caribbean Treatment Action Group Regional Director of the International Treatment and Preparedness Coalition – Latin America and Caribbean (Spanish); Joumana Hermez of the WHO Eastern Mediterranean Regional Office (EMRO) (Arabic); Keneth Ehouzou of UNFPA (French); and Annette Sohn of TREAT Asia (Thai).

Written by Kathleen Fox, Department of HIV, World Health Organization, Geneva.

Survey developed and/or analyzed by Kathleen Fox, Rachel Baggaley, Katherine Noto, and Gonçalo

Figueiredo Augusto of the Department of HIV, WHO; and Jane Ferguson of the Department of Maternal,

Newborn, Child, and Adolescent Health, World Health Organization, Geneva.

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4 Abbreviations and acronyms

AIDS acquired immune deficiency syndrome ALHIV adolescents living with HIV

ANC antenatal care ART antiretroviral therapy ARVs antiretrovirals

CDC U.S. Centers for Disease Control and Prevention CHTC couples HIV testing and counselling

DHS Demographic and Health Surveys FBOs faith-based organizations

HIV human immunodeficiency virus HTC HIV testing and counselling MCH maternal and child health M&E monitoring and evaluation MMC medical male circumcision MSM men who have sex with men NGOs non-governmental organizations OST opioid substitution therapy

PEPFAR U.S President’s Emergency Plan for AIDS Relief PITC provider-initiated testing and counselling PMTCT prevention of mother-to-child transmission PrEP pre-exposure prophylaxis

PWID people who inject drugs RCT randomized controlled trial STI sexually transmitted infection SW sex workers

TB tuberculosis UN United Nations

UNAIDS Joint United Nations Programme on HIV/AIDS UNICEF United Nations Children’s Fund

UNFPA United Nations Population Fund

USAID United States Agency for International Development VCT voluntary HIV testing and counselling

WHO World Health Organization

YKAP young key-affected population

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5 Executive Summary

Globally, more than two million adolescents aged 10–19, and five million young people aged 15–24 are living with HIV. Many factors contribute to this: from low levels of testing and linkage to care and prevention, to poor retention in care and adherence to antiretroviral treatment (ART). By increasing adolescent-focused treatment and care services, adolescents and young people (10–24 years) will be more likely to be better engaged in care and treatment, thus reducing morbidity and mortality in this greatly underserved population.

A scoping exercise of published literature relating to the care and treatment values and preferences of adolescents living with HIV (ALHIV) was conducted using PubMed, Google scholar and Google. The search method employed combinations of terms for adolescents, HIV, care, service, and values and preferences. Studies were categorized and qualified by topic, study design type, and income level. This informed the content of an e-survey of 36 questions that was disseminated in six languages through various international and youth organizations (379 respondents aged 10–24 years from 46 countries completed the survey in full).

The scoping exercise highlighted eleven major themes, chief amongst them were access to care and medication, psychological/mental health support, transition and continuity of care services and support, learning materials about HIV, opportunities to participate in or be responsible for their own health care, and health-care provider knowledge, attitudes, and confidentiality. Data collected from the survey revealed that 72% of ALHIV had either some or significant difficulty accessing health care, but about 87%

felt comfortable asking health providers about either their general health (85%) or HIV (88%). Open- ended questions underscored the importance of staff and peer support (~72%). Respondents suggested better or more education (~37%) and age-appropriate support (~35%) as areas for improvement.

Adolescents need to be engaged in their HIV care and treatment. Governments and organizations need to tailor services to meet the specific needs of adolescents and support the development of

responsibilities aimed at self-care. At the same time, governments must identify and address barriers to

acceptable and effective provision of services to adolescents, including the training of service providers

to better communicate with this unique and underserved population.

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6 1. Introduction

Globally, over two million adolescents aged 10–19, and five million young people aged 15–24 are living with HIV. Many factors contribute to this high prevalence: from low levels testing and linkage to care and prevention, to poor retention in care and adherence to antiretroviral treatment (ART) in this population. By increasing adolescent-focused treatment and care services, adolescents (10‒19 years) and young people (20–24 years) will be more likely to be better engaged in care and treatment, thus reducing morbidity and mortality in this greatly underserved population.

Adolescents living with HIV (ALHIV) have been infected with HIV through one of two pathways: through vertical transmission, from mother to child via pregnancy or breastfeeding, or through horizontal transmission, from either sexual (i.e. consensual or non-consensual penetrative sex) or non-sexual methods (e.g. injecting drug use, exposure to infected blood, medical procedures).

Systematic reviews have been conducted to examine a range of relevant studies on adolescent-related topics from the availability of HIV testing and counselling services for adolescents to the provision of and access to HIV care and treatment services for ALHIV. These reviews have indicated significant barriers and facilitators to improving the provision of and access to health care and HIV services for ALHIV:

however, few of the studies discussed in these reviews have included the values, preferences, and perceptions of the adolescents themselves.

The WHO guidelines development process requires consultation with stakeholders engaged at all levels:

this survey was developed to understand the values, preferences, and attitudes of the end-users—

adolescents and young people living with HIV—of various types of HIV care and treatment services and interventions. A survey was conducted to facilitate the inclusion of those voices into the guidelines process.

The results of the survey are presented in this report and will be used as supporting information for the Guideline Development Group (GDG). The GDG is comprised of experts in adolescent health and HIV from various countries and affiliations, including civil society. The data and results of the survey will be considered in conjunction with graded literature to aid the development of the guidelines at a meeting of experts to be held in October and November 2012.

2. Objectives

A study of the values and preference of adolescents was conducted to facilitate the participation of those who will be most affected by HIV care and treatment services for adolescents living with HIV and the inclusion of their voices in the guidelines development process. The key objectives of this study were:

 To gain an adolescent perspective of HIV care and treatment services including the benefits and barriers to accessing services and remaining retained in care;

 To have a better understanding of what aspects of care and treating are important to adolescents when seeking, initiating, and remaining in care;

 To explore accessibility and effectiveness of services from adolescents’ viewpoints.

3. Methodology 3.1 Survey design

The development of the survey was conducted in two distinct phases. First, a scoping review of

published and gray literature (37 sources, descriptive studies, and reports were identified during the

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7 literature review) was conducted to look at current discussions of and studies examining the values, preferences, and attitudes of adolescents and young people living with HIV (10–24 years) regarding their health and HIV care. The scoping exercise identified eleven key themes to be addressed in the

community survey:

 Access to care and medication – broadly defined to include not only physical access to treatment and care, but also financial and social support (including provider and community stigma which were found to be major barriers to utilization of available services);

 Structure of health-care services;

 Availability of youth-friendly or adolescent-only services;

 Opportunities to participate in or be responsible for one’s own health care;

 Transition and continuity of care services and support – from paediatric and/or adolescent services to adult health- or HIV-care services;

 Psychosocial/mental health support – from access to counsellors to skills development;

 Peer, community, and social support;

 HIV education and knowledge- and skills-building services;

 Sexual and reproductive health education and services;

 Knowledge, attitudes, and confidentiality of health-care providers;

 Confidentiality, disclosure, and privacy.

Based on the findings of scoping exercise, examination of published and unpublished HIV-related surveys, and discussion with WHO and GNP+ (Global Network of People living with HIV) colleagues, a draft of the survey was developed. With the assistance of GNP+ the survey was pilot tested by seven members of Y+, a network within GNP+, comprised of adolescents and young people living with HIV—

from Africa, South America, and Asia, and feedback was provided through GNP+, thus maintaining the anonymity of the young people. Based on that feedback and further discussions with Georgina Caswell at GNP+, a second draft was developed and then pilot tested by five young people in a group at the Mortimer Market and Archway Centres in London.

The final survey was comprised of thirty-six questions: thirty-three close-ended and three open-ended.

Only three of the questions were required: The first asking for the respondent to consent to take the survey, another asking the respondent’s age, and the last asking for the respondent’s HIV status. The last two questions served to disqualify those who did not fall within the defined survey population—

adolescents and young people living with HIV (10–24 years).

The survey asked respondents to provide demographic data regarding their age, sex, location, occupation, and HIV status. If they indicated they were HIV-positive, they then answered questions about what types of services providers they access and how often, how they felt about the services available to them, what types of services they would like, and how responsible they were for their own health—from making their own appointments to remembering to take their medication. The

approximate completion time was twelve to fifteen minutes (depending on length of answers provided for open-ended questions).

The survey was translated by volunteers into five languages—Spanish, French, Russian, Thai, and Arabic, and, along with the English version, were uploaded to the internet.

3.2 Distribution of the survey

Information about the survey was provided to a wide range of international, national, and regional

networks working with adolescents living with HIV, asking them to circulate the survey in either digital

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8 or paper form. A few of the community-based networks and groups also assisted with the

administration of the survey.

3.3 Ethical considerations Anonymity of participants

The survey was designed to keep the identities of the respondents anonymous. No identifiable information was requested and no IP addresses were stored. Where computer access was lacking or limited at best, the survey was administered on paper in a manner suitable to the context (e.g. placed in envelopes that were then sealed and shipped to WHO), while retaining the anonymity of the

respondents as best as possible. In cases where the respondents required assistance or translation by an administrator was required, survey administrators gained verbal consent from the adolescent

respondents.

Opt in, opt out

One group from Lesotho, administering the survey verbally on an individual basis, chose to eliminate the question asking if the respondents knew how they got HIV because the administrators felt that the question was too sensitive for their group of young people. Adolescents and young people taking the e- survey were able to skip almost all of the questions provided, with the exception of the three questions asking for their consent to take the survey, their age, and if they are living with HIV. The latter two questions were used to disqualify respondents who did not fall within the required age range of 10 ‒ 24 years and were not currently living with HIV. For those respondents within the qualifying age range, who chose not to disclose their HIV status, the disqualification message reemphasized the purpose of the survey: “We are looking for the opinions and experiences of young people (ages 10‒24) living with HIV who know they are living with HIV and are willing to disclose their status. If you are living with HIV and would like to complete the full survey, please start again.” On every page of the survey respondents were provided an exit button, enabling them to leave the survey at any point they wished.

3.4. Survey consultation respondents

The survey consultation was available in both electronic and paper versions in order to reach as many adolescents and young people as possible.

A total of 830 people started the online surveys—available in English, Spanish, French, Thai, and Russian—after which 376 were disqualified because of age or because they exited the survey and 116 were disqualified because they indicated they were not HIV positive or did not know or did not wish to disclose their status. The disqualification statement explained we were looking for opinions from young people living with HIV regarding their care and invited those who were disqualified to complete the survey by disclosing their status. 338 respondents remained within this group.

An additional 111 adolescents and young people completed paper versions of the survey, 2 of which were disqualified because they answered ‘I don’t know’ regarding their HIV status. 109 respondents remained within this group.

A total of 447 adolescents and young people completed the full survey.

• Ages: 10‒12 (26), 13‒14 (39), 15‒16 (47), 17‒18 (63), 19‒20 (91), 21‒22 (82), 23‒24 (99)

• 57 countries represented

– The greatest number of respondents come from Cameroon (55), India (50, evenly

distributed amongst the age groups), Nigeria (50, mainly between 17 and 22 years),

Thailand (28, evenly distributed amongst age groups), Ghana (25, mainly between 17

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9 and 22 years), Lesotho (18, between 10 and 18 years), Philippines (17, between 19 and 24 years), Malawi (15, mainly between 14 and 20 years), Zimbabwe (15, mainly between 21 and 24 years), Mexico (13, between 19 and 24 years) and Rwanda (12, fairly evenly distributed amongst the age groups)

– Eight countries had between 5 and 10 respondents, while the remaining countries had between 1 and 3 respondents.

– Several adolescent-focused NGOs were very successful gaining participants in Cameroon, India, Lesotho, Malawi, and Rwanda. Surprisingly, teen club participation, even at the individual level, was very low or nonexistent in Swaziland (1) and Botswana (0).

• Participation from sub-Saharan Africa

– The following western and central African countries are represented: Cameroon (55), Cote d’Ivoire (1), The Gambia (1), Ghana (25), Nigeria (50), and Senegal (3).

– The following eastern and southern African countries are represented: Ethiopia (1), Kenya (7, 19‒24 years), Lesotho (18), Malawi (15), Mozambique (1), Namibia (7, 13‒20 years), Rwanda (12), South Africa (9, 10‒18 years), Swaziland (1), Tanzania (2), Uganda (8, 19‒24 years), Zambia (7), and Zimbabwe (15).

Table 1. Characteristics of survey respondents by age, sex, and country [including non-responses]

Ages Number per age

Number per gender

Countries

10‒12 26 (5.8%) M 14 Country M F T O NR Total

F 12 Cameroon 5 3 - - - 8

T - India 2 6 - - - 8

O - Lesotho 2 2 - - - 4

NR - Malawi - 1 - - - 1

Rwanda 2 - - - - 2

South Africa 1 - - - - 1

Thailand 2 - - - - 2

Total 14 12 0 0 0 26

F 24 Cameroon 2 5 - - - 7

T - India 3 6 - - - 9

O - Lesotho 1 3 - - - 4

NR - Malawi - 1 - - - 1

Moldova 2 - - - - 2

Namibia - 1 - - - 1

Nigeria 2 - - - - 2

South Africa - 3 - - - 3

Ukraine 1 - - - - 1

Zimbabwe 1 1 - - - 2

Thailand 2 - - - - 2

Uzbekistan - 1 - - - 1

NR 1 3 - - - 4

Total 15 24 0 0 0 39

F 21 Australia - - 1 - - 1

T 1 Cameroon 1 4 - - - 5

O - India 6 1 - - - 7

NR 2 Kazakhstan 1 - - - - 1

Lesotho 2 4 - - - 6

Malawi 2 3 - - - 5

Mozambique - 1 - - - 1

Namibia 1 - - - 1

Nigeria - 3 - - - 3

Rwanda 1 - - - - 1

Tanzania - - - - 1 1

Thailand 5 3 - - - 8

USA - 1 - - - 1

Uruguay 1 - - - - 1

NR 2 1 - - 1 4

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Total 23 21 1 0 2 47

F 34 Afghanistan - - 1 - - 1

T 1 Cameroon 3 4 - - - 7

O - Estonia - 1 - - - 1

NR - Ghana 4 - - - - 4

India 4 3 - - - 7

Lesotho 3 1 - - - 4

Malawi 2 1 - - - 3

Namibia 1 3 - - - 4

Nepal - 1 - - - 1

Nigeria 6 5 - - - 11

Rwanda - 2 - - - 2

Thailand 3 7 - - - 10

United Kingdom - 1 - - - 1

USA - 3 - - - 3

Zimbabwe 1 - - - - 1

NR 1 2 - - - 3

Total 28 34 1 - - 63

F 55 Cambodia - - - 1 (gay men) - 1

T 1 Cameron 6 11 - - - 17

O 1 Ghana 4 10 - - - 14

- Gay men India 1 3 - - - 4

NR 1 Kenya - - - - - -

Lesotho - 1 - - - 1

Macau - 1 - - - 1

Malawi 3 2 - - - 5

Mexico 2 - - - - 2

Moldova - 2 - - - 2

Namibia - 1 - - - 1

Nepal 1 - - - - 1

Nigeria 7 15 - - - 22

Paraguay 1 - - - - 1

Philippines 1 - - - - 1

Rwanda 3 - - - - 3

Thailand - 2 - - - 2

Uganda - 2 - - - 2

United Kingdom 1 - - - - 1

Zambia - 1 - - - 1

Zimbabwe - 1 - - - 1

NR 2 3 1 - 1 7

Total 33 55 1 1 1 91

F 39 Argentina 3 - - - - 3

T 2 The Bahamas - 1 - - - 1

O - Bhutan - - 1 - - 1

NR - Cameroon 3 8 - - - 11

Colombia 1 - - - - 1

Cote d’Ivoire - 1 - - - 1

Dominican Republic 1 - - - - 1

Germany 1 - - - - 1

Ghana 1 5 - - - 6

India 6 2 - - - 8

Indonesia - 1 - - - 1

Kenya 1 2 - - - 3

Malaysia 1 - - - - 1

Mexico 2 1 - - - 3

Nepal - 1 - - - 1

Nigeria 3 6 - - - 9

Philippines 5 - - - - 5

Romania - 1 - - - 1

Rwanda 1 1 - - - 2

Senegal - 1 - - - 1

Tanzania 1 - - - - 1

Ukraine 1 - - - - 1

United Kingdom 1 - - - - 1

Uruguay 1 - - - - 1

USA 1 - 1 - - 2

Venezuela 1 - - - - 1

Vietnam 1 - - - - 1

Zambia 1 1 - - - 2

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NR 2 2 - - - 4

Total 41 39 2 - - 82

F 30 Algeria - - 1 - - 1

T 4 Argentina 2 - - - 1 3

O 2 Belize 1 - - - - 1

- Bisexual - Gay male

Burma - - 1 - - 1

Colombia 1 - - - - 1

NR 4 Denmark 4 1 - - - 5

Egypt 1 - - - - 1

Ethiopia - 1 - - - 1

The Gambia - 1 - - - 1

Germany 1 - - - - 1

Ghana 1 - - - - 1

Guyana - 1 1

India 5 2 7

Indonesia 1 - - - - 1

Jamaica 2 - - - - 2

Kazakhstan - 1 - - - 1

Kenya - 2 - - 1 3

Malaysia 2 - - - - 2

Mexico 8 - - - - 8

Moldova - 1 - - - 1

Nigeria 3 - - - - 3

Philippines 8 - - 2 (gay male,

bisexual) 1 11

Romania - 1 - - - 1

Russia 3 - -- - - 3

Rwanda 1 1 - - - 2

Senegal 1 1 - - - 2

Spain 3 - - - - 3

South Africa - 3 - - - 3

Swaziland - 1 1

Uganda 3 3 - - - 6

Ukraine 1 - 1 - - 2

USA 2 1 1 - - 4

Zambia 1 3 - - - 4

NR 2 - - - 1 3

Total 59 30 4 2 4 99

Table 2. Regions and countries represented

Region and countries Number of

respondents

Western and Central Africa 135

Cameroon 55

Cote d’Ivoire 1

The Gambia 1

Ghana 25

Nigeria 50

Senegal 3

Eastern and Southern Africa 103

Ethiopia 1

Kenya 7

Lesotho 18

Malawi 15

Mozambique 1

Namibia 7

Rwanda 12

South Africa 9

Swaziland 1

United Republic of Tanzania 2

Uganda 8

Zambia 7

Zimbabwe 15

Eastern Mediterranean 3

Afghanistan 1

Algeria 1

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12

Egypt 1

The Americas 41

Argentina 6

The Bahamas 1

Belize 1

Colombia 2

Dominican Republic 1

Guyana 1

Jamaica 2

Mexico 13

Paraguay 1

United States of America 10

Uruguay 2

Venezuela 1

Europe and Central Asia 31

Denmark 5

Estonia 1

Germany 2

Kazakhstan 2

Moldova 5

Romania 2

Russia 3

Spain 3

Ukraine 4

United Kingdom 3

Uzbekistan 1

South-East Asia 85

Bhutan 1

India 50

Indonesia 2

Myanmar (Burma) 1

Nepal 3

Thailand 28

Western Pacific 24

Australia 1

Cambodia 1

Macao (SAR) 1

Malaysia 3

Philippines 17

Viet Nam 1

No country indicated 25

Total 447

3.5. Limitations of the survey consultation

While the survey was circulated globally, adolescents already actively engaged in HIV care and

treatment provided the highest number of respondents. For this reason, the survey results were limited and not representative of all adolescents living with HIV who may not be linked to networks or receiving care. In general, the adolescents receiving care described being happy with their care, however a significant proportion —between 72 and 74%—were not.

For these reasons, any quantitative data collected must be perceived as limited at best. However, the research does provide us with some understanding of adolescents, particularly those in areas where participation in the survey was higher: New Delhi, India (India HIV/AIDS Alliance); Maseru, Lesotho (Sentebale); Malawi (unknown teen club); Cameroon (Positive Action for Treatment Access and an unknown adolescent support group); Kigali, Rwanda (UNICEF country team).

4. Key findings from survey consultation

Ease of access to services. Most of the adolescents and young people who took the survey expressed

that access to care and attending health-care appointments were either very easy or not a significant

challenge. Twenty-nine per cent of respondents (63 male and 50 female) reported that it was very easy

to access services, 62% (105 male and 139 female) reported variability in the ease of access and 10% (26

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13 male and 10 female) reported that it was very difficult to access their health-care services. Twenty-six per cent of respondents felt that attending health-care appointments did not interfere with their lives at all, however 59% felt that it sometimes interfered and 15% felt that attending health-care services interfered with their lives a great deal.

Twenty-six per cent of those who responded to the open-ended question asking what they liked the most about the care they receive, stated that access to treatment—from availability and cost of regular health check-ups and drug treatment (ART) services to proximity of services, short lines/queues, and specialized health-care workers—was a major factor in their positive experience with their current health-care and HIV services. Several mentioned the importance of NGOs in supporting the provision of life-saving drugs and services.

“I like the way they help us in treatment by free of cost.” 10-12, Female, India

“The supports provided by some of the NGOs like medicine support, education support and psychological support.” 15-16, Male, India

“About HIV care and treatment given by govt. hospitals and other NGOs working in the field.” 19-20, Female, India:

“The clinic is not far from my dormitory…”21-22, Female, Thailand

“Poder tener la atencion cuando la necesito y tambien la medicacion” [“Having the attention when I need it and also the medication”] 23-24, Male, Argentina:

“That I freely access the ARVs and it's very rare to find drug stock outs at the clinic as its in the city center.” 23-24, Male, Uganda

Those who found access somewhat or very difficult identified barriers to access to services such as cost, ARV stock outs, lack of doctors or adequately trained health-care professionals, lack of HIV services in many (especially rural) areas, lack of youth-friendly services, and poor treatment and stigma by health- care providers.

“Yo soy Uruguayo y tuve que venirme a tratar a Argentina porque aquí casi todo el tratamiento y la medicación es gratuita. En Uruguay no, hay una extrema ignorancia desde todos los puntos de vista, ni la medicación es gratuita, ni la facilitan, ni el tratamiento en si.” [“I’m from Uruguay and I had to come to Argentina to get treatment because here almost all treatment and medication is given for free. In Uruguay it’s not like that. There is a lot of ignorance and medication and treatment are not free or facilitated.”] 21-22, Male, Uruguay

“Comprehensive health services, including SRH [sexual and reproductive health] and no stigma discrimination” 21-22, Female, Indonesia

“Make it easier to get meds and pick them up at other locations.” 23-24, Male, Argentina

“Need to improve on attendance time by the doctor when I or other young people visit a health facility due to stigma. Need pharmacy attendance to be sensitized on how they handle young YPLWHIV at the counter.” 23-24, Female, Kenya

“The health centers should have youth friendly stuff to cater for our needs, also privacy is an issue,

not all of us are ready to disclose, there is a problem at our hospitals when we queue at a window

written ARVs everyone can see that we are HIV positive and that makes the stigma to be worse.” 23-

24, Female, Swaziland

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14 Interactions with providers. In the survey, most of the respondents indicated they had good experiences interacting with health-care providers and felt comfortable asking both general health- and HIV-related questions. Eighty-five per cent of respondents reported moderately good to very good interactions (51% moderately good and 34% very good) with their providers in terms of comfort in asking general health-related questions. However, 15% did not report good interactions with their health-care providers. Eighty-eight per cent of respondents reported moderately good to very good interactions (51% moderately good and 38% very good) with their providers in terms of comfort in asking HIV-related questions. Thirty-five per cent reported that a provider contacts them if they miss an appointment.

“Я могу спокойно разговаривать с ними обо всём, включая и свое заболевание. Могу открыто излагать свои потребности.” [“I can calmly talk to my care givers about everything, including my condition. I can openly express my needs."] 15-16, Male, Kazakhstan

“The way the doctors care for us as patients, they show love and care.” 15-16, Female, Malawi

“Everyone at the clinic is so understanding and they are willing to help me with any problems I come across. I can really trust them.” 17-18, Female, USA

“Friendly environment with the care givers in the health centres.” 19-20, Male, India

“I suggest if the attitude of health care providers could be changed, it will help we the young people have access to the care services we need. Their attitude towards young people seeking treatment is very poor. They usually judge why young people seek treatment or contraceptives and this affects how they help the young even if he/she is at risk. We need a youth-friendly environment that can attract and serve the young who may be embarrassed or intimidated to seek HIV care.” 23-24, Female, The Gambia

Transition to adult services. The survey revealed that a majority of adolescents and young people either do not receive paediatric or adolescent services, or, if they do, have never discussed transitioning to adult services. The age distribution of the 40% who answered they had not discussed transition with their health-care providers was evenly distributed throughout the 10 to 24 year age range. Of the respondents who said they are currently receiving paediatric or adolescent services, 38% had discussed a transition to adult care with their provider on at least one occasion, 40% had discussed it two to three times with their provider, and 22% had discussed it more than three times with their provider.

Autonomy. Responses regarding the extent to which respondents took responsibility for their health care suggest a high level of autonomy among the group surveyed. Autonomy was gauged by respondents’ indications that they took responsibility for:

 Making one’s own appointment (34%‒never; 7%‒not now, but would like to; 32%‒sometimes;

22%‒all the time; 4% not applicable);

 Attending appointments alone (13%‒never; 17%‒not now, but would like to; 27%‒sometimes;

41%‒all the time; 2% not applicable);

 Asking the provider questions (7%‒never; 18%‒not now, but would like to; 44%‒sometimes;

30%‒all the time; 1% not applicable);

 Helping to choose one’s own treatment plan (28%‒never; 22%‒not now, but would like to;

24% ‒ sometimes; 20% ‒ all the time; 6% not applicable);

 Picking up one’s own medication (16% ‒ never; 10% ‒ not now, but would like to; 22% ‒ sometimes;

48% ‒ all the time; 4% not applicable);

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15  Remembering to take one’s medication (34% ‒ never; 7% ‒ not now, but would like to;

32%‒sometimes; 22%‒all the time; 4% not applicable);

 Seeking other types of care as desired or needed (3%‒never; 3%‒not now, but would like to;

10%‒sometimes; 81%‒all the time; 3% not applicable).

The most positive aspects of care reported by respondents included sensitive and caring treatment by providers; home visits; opportunities for meeting other ALHIV to share experiences and to feel empathy with others; and interactions with providers who preserve a sense of optimism and hope, and explain that all of life’s experiences and dreams are open to ALHIV.

Twenty-three per cent of those who responded to the open-ended question asking what they liked most about the care they receive, valued the support the received from peer groups, teen clubs, and peer mentors:

“I enjoy being with other children because I learn about good adherence.” 13-14, Female, Lesotho

“Having the to be a part of a support group (teen club) Having mentors who have so much information on HIV.” 15-16, Male, Malawi

“การเรียนรู้เรื่องการดูแลสุขโดยผ่านการท ากิจกรรมกลุ่ม มากกว่าการนั่งฟังข้อมูลอย่างเดียว“ [“Learning through group activities, rather than sit and listen to the same information…”] 15-16, Male, Thailand

“People like us should have counselling and we should counselling others were should make them be comfortable.” 15-16, Female, Lesotho

“Supportive friends and other PLHIV including a presence by PLHIV volunteers at the hospital.” 17-18, Female, Nepal

“Que se explique las oportunidades de seguir viviendo con calidad de vida, testemonios de personas que han superado la etapa de diagnostico de ser PVV” [“I like that the opportunities of living with quality of life are explained, and testimonials of people who have overcome the diagnosis of HIV are shared.” 21-22, Male, Venezuela

“Avoir des séances de soutiens entre pairs, avoir des formations pour mieux se prendre en charge dans le futur sans que mon statut s'y affecte. J'aimerai aussi avoir un traitement de qualité basé sur une éducation sexuelle adaptée à mon âge” ["[I like] to have the group support sessions, to have training to better take care of myself in the future without being affected by my status. I would also like to have a quality treatment based on appropriate sex education for my age.”] 21-22, Female, Senegal

Suggestions for improvements in services for ALHIV included age-appropriate support, material support (clothing, food, support for orphans), more protection for children from the damaging effects of stigma and discrimination, more comprehensive information about all the ways that HIV is transmitted, dedicated spaces and activities for ALHIV where they can be with peers who understand what it is like to live with HIV, and educational opportunities for those who do not attend school.

Thirty-one per cent of those who provided suggestions on how to improve services indicated the need for age-appropriate support—from the separation of adolescent and adult services by location, day, or time, to the provision of peer support in the forms of groups, mentoring, teen clubs, or camps.

“Не хочу чтобы меня видели в очереди другие взрослы больные” [“I do not want to be seen in

same line as the adult patients.”] 13-14, Male, Moldova

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16 “Have Teen Clubs at every health centre (Support groups for ALHIV...” 17-18, Male, Malawi

“Our peers should be trained to support more of our friends because entering the clinic the first time I really suffered.” 19-20, Female, Uganda

“Want to keep a special day for young people.” 21-22, Male, India

“Having more HIV peer group activities such as camp. Support the educational funds for who needed.” 21-22, Female, Thailand

“Right now in Zimbabwe, many children suffer stigma and discrimination, so naturally I would say if it were possible to shield them from such harsh treatment as it sometimes leads to suicide. If maybe there could be an adolescent/youth friendly corners all over the country where I do not have to be shy to ask about Adolescent Sexual Reproductive Health.” 21-22, Female, Zimbabwe

“I would like to suggest you or others people in charge of this to find for us young people living with HIV a time for appointment not different to adult” 23-24, Female, Rwanda

5. Discussion

The findings from this survey consultation show that adolescents and young people are not only interested in communicating their care and treatment values, preferences, and attitudes, but also are willing to provide solutions to current inadequacies in services. While the results are limited and

therefore not necessarily representative of all adolescents living with HIV globally, the data did highlight five key areas where providers of adolescent services should focus.

First, and most importantly, that services for adolescents living with HIV should be offered. How those services are manifested is largely dependent upon context and availability of resources. If adolescent- specific facilities cannot be created, then possible solutions are adolescent-specific days or times at existing facilities. Regardless of the type of facility, a youth-friendly environment with accessible and communicative health-care providers is necessary to provide a physically and emotionally supportive space where ALHIV can feel safe and protected. Finally, the provision of supportive activities, such as teen clubs, peer mentoring training, and ALHIV camps, offer ALHIV environments where they feel

‘normal’, yet have peers who understand what it is like to live with HIV.

6. Conclusion

Adolescents need to be engaged in their HIV care and treatment. Governments and organizations need to tailor services to meet the specific needs of adolescents and support the development of

responsibilities aimed at self-care. At the same time, governments must identify and address barriers to

acceptable and effective provision of services to adolescents, including the training of service providers

to better communicate with this unique and underserved population.

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17 7. Appendices

7.1 Survey text in English [Directions for the survey]

1) This question requires an answer.

2) Thank you for your help with our survey.

We are looking for the opinions and experiences of young people (ages 10 - 24) living with HIV who know they are living with HIV and are willing to disclose their status.

If you are living with HIV and would like to complete the full survey, please start again.

[Survey Title]

What do you want and need from your health care as a young person living with HIV?

[Introductory Page Content]

Welcome!

The World Health Organization is developing international guidelines on health care for young people living with HIV. We believe it is very important that the voices of young people living with HIV be included in the development of these guidelines.

The survey:

If you are between the ages of 10 and 24 and living with HIV, we ask that you answer the questions in this survey so we can better understand what you want and need from your HIV care.

We hope that the survey will take about 15 minutes to do. Most of the questions will only need you to tick/check an answer; but several questions have boxes where you can write an answer to the question or just tell us your thought and opinions.

Answering the survey is absolutely voluntary – if you feel uncomfortable with a question, you can skip that question or end the survey altogether. However, for us, the more questions you answer, the more we will be able to learn from you.

Your privacy:

The survey starts by asking for some basic information about you. We only ask for that information so we have a basic description – age, sex, country, education – of those who have given us input. We will not be collecting any information about you (or your computer, if you are taking this online) that will link your answers to you – your answers are completely anonymous. This is a safe environment for you to tell us about your thoughts and

experiences as a young person living with HIV.

Your thoughts and opinions will help us develop international guidelines for HIV care for young people living with HIV. The guidelines will help organizations and your government understand how to improve services for you.

Please feel free to share the link to this survey with other young people living with HIV. The more voices we hear, the better!

If you have any questions about the survey, please email Kathi (foxka@who.int), Jane

(fergusonj@who.int), or Rachel (baggaleyr@who.int).

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18 Thank you so much for your help!

[Consent Title Page]

Do you consent/agree to take this survey?

[Consent Page Content]

Please tick/check the circle below, to confirm that:

The purpose of the survey was described to me. I am volunteering to take this survey and understand that, at any point, I can choose to not answer a question or to leave the survey. I understand that my answers will be anonymous (cannot be linked to me in any way). If I have any questions or concerns about the survey, I can email Kathi (foxka@who.int), Jane (fergusonj@who.int), or Rachel

(baggaleyr@who.int).

Welcome!

Do you consent/agree to take this survey?

1. I understand the points above, and consent to participate in this survey.

o Yes

[Demographic Information Title]

Demographic Information

[Demographic Information Content]

2. As of today, how old are you?

o <10 years of age o 10-12 years of age o 13-14 years of age o 15-16 years of age o 17-18 years of age o 19-20 years of age o 21-22 years of age o 23-24 years of age o >24 years of age 3. Are you:

o Male o Female o Transgender

o Other (please specify)

4. In what country do you currently live?

[Survey Monkey will provide answers, or give me a list of countries and I will configure the survey to include only them, and an ‘other’ option]

5. What is the highest level of education that you have completed?

o Primary

o Secondary (high school)

o Tertiary (college, university, or vocational training)

(19)

19 o Other (please specify)

6. Are you currently a student (at any level)?

o Yes o No

7. Are you currently working at a job or volunteering?

o No, I am too young to work o No, I am unemployed

o Yes, I work or volunteer part-time o Yes, I work or volunteer full-time 8. Where do you live?

o Homeless

o Orphanage/care home o Live with friends o Live with family o Live alone

o Other (please specify)

9. Which of the following people give you emotional and practical support? (check all that apply) o Family

o Friends

o Religious/faith community o Health-care provider(s)

o Peer support group with other young people living with HIV o Other (please specify)

10. Are you living with HIV?

o Yes o No

o I do not know

o I do not wish to disclose

[Access to Care Title]

Access to Care

[Access to Care Content]

11. How do you think that you got HIV?

o From my mother

o Through sexual activities

o Through drug use (contaminated needle or syringe)

o From a blood transfusion, exposure to infected blood, or a medical procedure (injections, etc.) o I do not know

o Other (please specify)

12. How often do you visit a health-care provider for your HIV?

o Never

(20)

20 o Once a year

o Several times a year o Every other month o Once a month o Once a week

o More than once a week

13. Where do you receive your health care for HIV? (check all that apply) o I do not receive care for HIV

o General health centre o HIV clinic

o Visiting/mobile health workers o Other (please specify)

14. How do you pay for your health care? (check all that apply) o I attend a free clinic

o I pay

o My parents/family pay o My insurance company pays o The government pays o I do not know

o Other (please specify)

15. My health-care provider(s) primarily care for:

o Children only o Adolescents only o Families only o Adults only o All

o I do not know

o Other (please specify)

16. If you are currently receiving paediatric or adolescent services, has/have your health-care provider(s) discussed how you will move to adult services?